Brain Mets Sisters
Comments
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I had 10 sessions of WBR in February. My fatigue and appetite issues got better after I stopped the Decadron. I'd say by about 2 months out, I was feeling back to normal. My hair took 4 months before it even started to grow back in. I'm now 8 months from WBR and I'm finally at the point where I'm considering losing the scarf in the next month or two. Of course, I just found out I probably need WBR again. So much for the hair. :-(0 -
Sorry to post here but I haven't gotten a response in the family/caregivers section.
Just wondering about a family member that just started WBR. What happens after the 10 treatments? Is that all they can do? How long do you stay on the steroids? She had multiple spots.
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what are they giving you for HRADACHES???????? Always ibuprophen worked for me. Aarrghhhhhhhh0 -
whisper,
After WBR, my onc asked me to take steriods for few days and then tapered it down. He gave a low dose of 2mg but I know every onc is different and the dosage and tapering also depends in the amount of swelling and the onc. The onc may decide to do gamma rads if needed based on the follow up MRI. It depends on many factors. I write based only on my experience.
KLo,
I have tried everything for headaches. I have not discovered the magic pill as painkillers make me nauseous even when I take them with Zofran. My current standby is 5 mg OxyContin. I hope your headaches subside.0 -
Hi friends,
I was wondering if there are any of you out there that had radiation only to the brain mets and how long ago?
I just need some encouragement. It was 2 years ago today that I got the dreaded news of cancer, and I am feeling like some positive news may help the downer of a day.
I had gamma knife to one brain met over a year ago. I am dealing with necrosis now and get my last avastin next week to hopefully shrink the scar tissue.
Love to you all, Jill0 -
Jill,
It sounds very promising that you had a brain met radiated one year ago and have been stable since then with no new brain mets. That is great news. I think you should celebrate. Your cancer took a browbeating and decided hopefully never to come back. The Avastin hopefully is working its magic on necrosis. I am sure there others with positive stories.0 -
formygirls, I don't know if this will help but I'm about a month out and I finally complained to my onc that I was sleeping way too much and no energy at all. I thought I did a good job of weaning myself off the steroids.
She recommended I go back on a half pill and it's like over three days I woke up. Apparently my adrenal glands just didn't want to restart on their own.
Of course I have to wean again but if I have to I'll take it down to a crumb per day that's what I'll do.0 -
Thanks Formygirls! I love that when I was reading your reply I was smiling. Thanks for the positivity. How are you feeling my girl? Please let us know. xo Jill0 -
Dea K-lo;
sorry for my typosI ;'ve lsot a use of a hand arm m,but iam with you praying for your little miracle. May you be led to the rigth next treatment, or ideas. You never know when your doctor wil l come up wit ha new drug or somethign that wil l cure those brain mets. so far none for me! Almost two year now. Try green jucing, I know it may sound faddish but I think my oncoligist brain radiation said do it if it keeps themets away. First time I ied it it did not work I di mor of it , but now no mets.
Other than that, do some journaling, go deeper into your feelings , after yoru fisrt relax and have some sun and fun! Live for the moment, don't let that c word even enter yoru mind for while at least.
love
Marca0 -
Hello dearjilly; 'yes I had brain surgery for mets from breast nearly two years ago. I've lsot use of my right hand-except very minimal things. I am ok, yes I hsve some necrosis but they never fond the tumor in time to save my hand..or arm.
I am hanicapped but wrote two books, and learned to paint all over again using brushes tied to my hands. i've had nor recurrance elsewhere even. I sued the jucing and frankincence studesie are out her plant sources help keep cancer away.
Have hope dear sister and let hope bot of us continue to do so well. I've not been offered avastin but di ask for ozegen tehrapy for necresis it helped a bit with my hand. It was in spasm s pain al lteh time, now more stable and less necresosis I imagine.
blessings
marcia0 -
Hi All
First time post here, and appreciate all the information in this thread. I am 37 years old, diagnosed in March with stage IV inflammatory breast cancer with mets at that time to liver and bone. Underwent chemo, surgery and radiation and scans in Sept showed mets to brain and lung. Brain lesions were 1-2 cm, 3 in the main cortex and 1 in the brain stem. The cortex lesions were asymptomatic (we think) and the brain stem lesion was giving me jaw and ear pain. Underwent gamma knife in October and have my first follow up scan on Friday. Keep trying to wean off 3 mg of decadron, but jaw/ear pain keep coming back even when I go to 2 mg. Anyways, appreciate everyone sharing their experience so we can all learn and will try to share in my journey as well.0 -
Hi Ladies,
I have read many, many pages and learned a lot from all of you. Thanks for the info, it sure does help. I just finished my WBR yesterday, I feel fine but in a fog, could be due to the steroids, I hope so anyway! I was one them before and after surgery, then Dr. took me off when I first started WBR? I had terrible headaches and vomiting so he placed me back on them, thought I had swelling again and that did the trick.
Anyway, he started weaning me from them today and should be done with them in 4 days. My neurosurgeon told me not to drive because of where the tumor was that he removed. My sight is not great, feel like I need a stronger RX and right now (knock on wood), I do not seem to have any blind spots that he thought could happen with surgery. He wants to me to see an Eye Dr. before I drive. I am nervous! Anyone else go through this and did your sight get better after steroids?
P.S. All of the hair on my head fell out in one day!! It was like a switch went off. Today my eyes are super scratchy and irritated. Am I losing my lashes too? I hate that, it seems like any little thing floating around, it goes directly in my eyes.
Thanks for everything and good luck to all of you!
XOXOXO0 -
On Monday I go for my first followup high contrast MRI. The doctor will call me on Tuesday with the results.
This is the brain story so far:
September 9, 2013 had emergency brain surgery at the University of Miami to remove a 3.5 cm tumor in the parietal lobe that was causing brain to swell. Surgeon called it "angry and aggressive"
October 2013 had gamma knife to radiate the surgical bed as well as to zap 2 small (2mm) cancer things that were deep in the cerebellum.
Otherwise my breast cancer seems to be controlled in my bones (mostly pelvis) and nowhere else.
This MRI will show the status of the brain. I am still getting Herceptin every 3 weeks and have started Tykerb (2 pills a day). After this MRI my local oncologist wants me to consult with Dr. Nancy Lin (a brain mets specialist) at Dana Farber in Boston to get her recommendation for how to treat the brain systemically.
I'm still very afraid of Whole Brain Radiation, if the cancer has spread. Recently in the NY Times there was an article - "How Doctors Die" - about a 50 year old internist whose cancer had spread to the brain and knowing how all that worked, she refused WBRT, taking only palliative care until she died a few months later. Does anyone have any thoughts on refusing WBRT? Does it really help or does it just keep you alive a little longer, with little quality of life?0 -
@Marcia, Thanks for your reply. I appreciate you telling us your story, and what books did you write?
@Vickib, My story is different, but unfortunately, I lost my vision on the right side. It started out that that's how I found that there was a lesion in my brain, then after gamma knife it got worse and I have been living in my prison of a house for over a year! lol (trying to make light of such a crappy hand o cards)
I always hope that it's going to come back, but it just doesn't happen.
cheers! Jill0 -
Hi ALL!
I was my own advocate and asked for Avastin, since the lesion in my brain was only getting bigger after radio surgery/gamma knife. It was the necrosis that was growing, and it got so bad that my brain was shifting and things were just bad. Not even the steroids were helping anymore. My neurosurgeon was not going to operate due to the location of the lesion, just to risky.
I wanted to let all of you know about this. I found out about Avastin through a dear friend who went through a similar situation. The Avastin worked on her necrosis and it has on me, however, it's not FDA approved nor approved here in Canada for breast cancer. Other cancers, yes, but not in BC.
Since it clearly has helped me, and trust me it has, something must be done for us brain met sisters. At one point this drug was approved for BC, but not anymore. It's 2500-3000$ a pop too. Very expensive!
I'd like to get this out there to everyone of you! Honestly, Avastin has been a life saver for me so far.
Lots of love, Jill0 -
Thanks for the info Jill. Avastin is one I have not had, have to check into it. I am sorry to hear your vision is worse, it is so frustrating! It is aweful having to depend on everyone else to take you here and there.I am not sure of mine will come back fully either and the Dr. said he may have to clean up some areas with radio surgery too we will see... I am glad to see you have a sense of humor, it helps with sanity:) Atleast it does with me.
Shoo - I wishl I had an answer for you... I felt I had no choice with 9, possibly 10 or more lesions I had to give it a shot. Dr. said it was too many for radio therapy so I went for it. I was so sick and my head felt like someone was beating my skull with rocks. I thought I was having the Mother of all migraines but it was the lesions and swelling. It is a difficult decision, you just have go with what you belive. Hopefully someone will come along soon with more info. I just had my last one Wednesday so it is too early to tell.
Sending positive thoughts to all.
XOXOXO0 -
Vicki, I wish you the best and thank you for your response. I absolutely do not want to lose my hair again. Right now I'm on Tykerb and I think that is what is causing my scalp to itch and hurt (just like before hair falls out).
I have heard that WBRT causes dementia in 50% of the people who get it, and sometimes it doesn't happen until 6 months or 2 years later. I do not want to end up like this or do this to my husband. I would rather die sooner, than later if it means that I will have dementia.
Anyway, no use jumping to conclusions before I'm faced with them. MRI is tomorrow and I'm going to the drug store to pick up some valium to use while I'm in the tube!
Beth0 -
Hey gals, just checking in. How's everyone doing?
K-lo - I PM'd you since we haven't seen you in a while. How are the headaches?
formygirls - how are you? vickib, dearjilly, marcia, MDtomom, shoofoolatte, chickadee? How are all you gals? Hope everyone is doing okay.
I'm doing okay, just a few headaches here and there. My next MRI is on Monday, hoping for the best.0 -
nancy,
Good luck on the MRI. I hope Halaven is still treating you well.
Beth,
i hope your MRI went well and you not have to face any decisions.
I have my first post WBR MRI next month. I still have chemo fatigue or WBR fatigue. I do not know which but otherwise am doing ok. I always said I would rather die than do WBR, have dementia but when it has come to that point, the decision to stop tx was hard. I do not have the courage to do it yet. I know it is inevitable but it is hard to decide to leave the kiddos. Everyone has to make the decision on what is right for them. I have simply pushed out the decision to after the holidays. Rad onc said even if mid Jan MRI is bad to not worry as WBR just got over on OCT 31 and mid Jan is too soon for all WBR to have worked. Me thinks he is just being nice so I do not give up hope:)0 -
Beth, How did the scan go? I have been on Tykerb for a long time and I did not experience hair loss, hope you do not either.
I am doing pretty well, just kind of tired, a headache here and there and FREEZING my behind off! I lost all of my hair and I can't stand this cold weather. I have a burn rash on my forehead so I can't keep anyt hing on my head too long. I just took my first dose of Xeloda today, hopefully, I will not get all of the side effects from that.
Nancy, Good luck with the scan! Sending positive thoughts your way, please let us know how it went.
Formy, My friend's Mom's radiation was still working 6 months after her last radiation so I am assuming he was telling the truth. I iwll have my first, post WBR, MRI in January too... NERVOUS!
I hope all are doing well!!!0 -
Just an update. My MRI after first round of gamma knife on 10/22 showed improvement to all 4 lesions, but can't wean past 2 mg of decardon without return of symptoms ( headache and jaw pain). Only 1 new lesion appeared so will continue to follow with scans. Starting cycle two of xeloda to try to get some systemic control. How long have people needed to be on decardon after gamma knife?
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MDToMom,
Congratulations on your good scan. I have had gamma tx twice and both times I had to take decadron 2mg two hours before tx. But I think the dosage and the weaning schedule depends on many things such as number of lesions, size, whether you have symptoms. This is what I was told by my rad onc on my dosing. This time around I was put on a weaning schedule with decadron but I had two weeks of WBR. It was 2mg during tx and a weaning schedule for a week that had me on 2mg every other day. Based on what others have posted, I think my rad oncs at my center tend to under dose. I hope you can get off decadron soon.
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what a slow roller coaster ride. For several weeks after the first MRI I felt almost euphoric and. Enough energy to get some things done I'd been putting off. The balance issues and jelly legs disappeared
Ha! Slowly the balance issue has resurfaced. No energy. No appetite. Sleeping way to much. The follow up MRI was very pleasing to the RO, but I wasn't happy that everything but the biggest lesion was gone. It apparently shrunk by half. I know, I know that's a good thing.
So back on the steroids 4 times a day and a boost of 5 more zaps in January.
I hope the steroids wake up my adrenals or something. I can't even work up the enthusiasm to wrap a DVD for my son. ZZZZZZZZZZZZZZZzzzzzzzzzzzzzz
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Hang in there Chickadee.
Can you get someone to help you wrap? The best gift my friend gave to me this year was she came over yesterday and helped me wrap all of my presents. Not a little job with 4 kids. It was a life saver as I don't have the energy or the hands to do this.
hugs to you
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chickadee send me a PM so I can figure out how to get a wrapped DVD of your choice, or your sons ;-) to him, from you
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no wait I can PM you!
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Nancy, thanks for asking about us!
I'm good. I'm done my Avastin tx now. Slowly getting my energy back. I'm off of the decadron, so my sanity as returned...well....sort of. he he I am still a bit down from time to time, but I think that's just normal of a human going through the crap hand we have been dealt. However, as are lovely, beauts...aren't we ladies!??
I do have a few dizzy spells and headaches, but my last MRI was good, so I must remember that. I will have my next MRI in a month from now.
MDtoMom...I was off the dex pretty quickly. I will look at my calendar and notes and see the exact length of time......
I'll be back.........
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MERRY CHRISTMAS and A HAPPY NEW YEAR!!! xoxo
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greetings to you also Jilly.
Nancy,
How did your MRI go today? Do you have results already?
I have started having slight headaches at night but It could be so many reasons. I had started takingMarinol that I stopped after two days as I was sleeping all day.
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Well my onc called to let me know the blood test thinks I better get back on the chemo. So break over, but then I have to break again in January for a boost of 5 rads. I hope this all settles down but it looks like 2014 may be an uncertain year.
Count me a bit freaked out and not sure what to think.
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